“The more voices we have, the bigger the difference we can make”
Naomi Harris, Student Experience Officer in the School of Media, Arts and Humanities at the University of Sussex, leads the Staff Disability Network.
It’s important for people to talk at work about their disabilities. If we can normalise it and make reasonable adjustments, it can help us work to the best of our abilities. I see it all the time that people with disabilities work so much harder because they feel they have to.
We’re a small network of about 40 members, and we act as a sounding board for the Equality, Diversity and Inclusion Unit and other parts of Human Resources. I receive reports from HR and the EDI Unit, which I share with the network so that we can report back with our views. We’ve recently given feedback on what working from home is like for many of us, and any difficulties that might bring to us as individuals.
The University has formed a steering group to help support the work for Sussex to become Disability Confident. This is a government scheme aimed at helping employers to recognise the talents and skills of those with disabilities. The group is led by John Walker, the University’s new academic lead on disability, who’s keen to help change attitudes and perceptions around disability.
An important step for the network is to gather data. Until now, the only way of capturing data about disabilities has been through the job application form. But what if you develop a disability after you start working here? I’m pleased that there will soon be a new facility on My View, the HR portal, where you can add this information as well as details about other protected characteristics.
I’m in recovery from anorexia nervosa. I have been for the past two years, but I have been in and out of it for 12 years — since I was 14. It’s left me with pre-osteoporosis, which means I have to take calcium tablets for the rest of my life. Breaking a rib just from turning awkwardly is quite normal for me. I also take medication because I have damaged my stomach lining from having an empty stomach for so long. I try to be open about my anorexia because I’m finding that, whilst there is still ableism and more work needs doing, people are more accepting about anxiety and depression, but when it’s less common, like anorexia nervosa, they don’t always understand it. There have been multiple occasions where I have been told to “just eat”, or that I am either childish or attention seeking for having my diagnosis.
One of the great things about being in a group with a disability is that you can talk more easily to each other about some of the things that people — including health professionals — say to you. I know they are trying to be helpful, but some of us have complex conditions and needs. When I was very ill my doctors would call me once a week to check on me, and I cannot thank them enough for doing that. However, one doctor thought that telling me to eat would make me eat. It doesn’t quite work like that.
When I was at my worst I got an elderly cat — Monty — and he saved my life. I had to get up in the morning because Monty wanted breakfast. There’s a bond we have with animals that I never understood until I had Monty. He was my best mate and he knew when I was having a bad day. I’ve got two other cats now — not as bright as Monty, although they have their own Instagram (follow them on arthur_edith_fluffos) — but they know, too. I have brought this connection with animals into my work. As Student Experience Officer, and prior to the pandemic, I organised a rota of dogs that came in for an hour once a week for anyone to cuddle. We called it ‘Woof Wednesdays’ and it was enjoyed by students and myself. We even hosted a 1st birthday party for one dog.
My job has also been instrumental in my recovery because I have structure and routine, and I know I’m making a difference. I really love working at Sussex. I did my undergraduate degree here in psychology, then I did my Masters in mental health part time, working in the Residential Life team, and then moved to Media, Film and Music [which is now part of MAH]. I have been in this role for four years. Students come to me with so many different questions; no day is the same and I get to do really fun things with students. In my current role I lead on student community, so I do loads of work with Student Connectors and reps. I enjoy getting feedback from the students and building a relationship with them. The Student Connectors in MAH have created a podcast called ‘On the Record with MAH’. I recorded my episode of ‘Road Trip Tunes’ (a spin-off of ‘Desert Island Discs’) this week, which was enormous fun.
I am very lucky that I have two amazing parents and a boyfriend and a best friend for support — but a lot of people don’t have that. I want the network to be that support. I was part of an eating disorder support group that was hugely beneficial, and I had one-to-one counselling. Eating disorders are a coping mechanism, they’re often about finding control so that the rest of the noise goes away. I remember being so anxious that I couldn’t leave the house, I couldn’t make a phone call, but I thought it was ok because I’d only had x amount of calories that day. That’s not healthy. Not only are you fighting that really dominating voice in your head telling you that you must follow the rules your eating disorder has created and the physical consequences, you’re also fighting the pain or trauma of what triggered the eating disorder in the first place.
I can’t say I won’t have a flare-up again. It’s always in my brain, but it’s controlled. The more flare-ups you go through, the better you are at recognising the signs and doing something about it. I know that depression and anxiety is part of me, so there have been times in lockdown when I’ve deleted news apps because I’ve been overwhelmed by the bad news.
The more voices we have in the network, the bigger the difference we can make for people with disabilities. It’s also about being kept in the loop of stuff that we are working on. If you identify as having a disability, then join us by emailing email@example.com; currently only I have access to this account and all emails are treated confidentially. If you would like to talk about it informally, you can also message me on Teams.You don’t need to produce evidence of your disability and we understand that every one of us has had a completely unique experience. The only information I have is people’s names and their email address. If they’d like to disclose their disability, then that’s fine, but it’s not a requirement. The important thing is to feel connected — and listened to.
Interview by Jacqui Bealing
University of Sussex